EPILEPSY CARE
IS BROKEN.

HERE IS HOW TO FIX IT.

Across Australia and much of the world, people living with epilepsy are caught in a system that was never designed for their complexity — waiting months for neurologist appointments, navigating fragmented care, and absorbing financial costs that force impossible choices. A convergence of new research, advocacy, and technology is beginning to challenge that reality. But the gap between what is possible and what is accessible has never been more stark.

THE ACCESS CRISIS:
What the data reveals

A landmark study published in Epilepsia (Josephson et al., 2025) offered quantitative proof of something clinicians had long suspected: specialised, comprehensive epilepsy care does not drain healthcare budgets — it rescues them. Tracking over 300 patients at the University of Calgary's comprehensive epilepsy program for three years before and after admission to a Level 4 seizure monitoring unit, researchers found that per-person healthcare costs had been climbing at an average rate of roughly CAD $341 per six-month period leading up to admission.

Yet access to such centres remains profoundly unequal. Research has documented significant disparities in the nationwide distribution of these facilities, with rural communities, lower-income populations, and minority groups consistently underserved. In Australia, the equity gap runs even deeper: Aboriginal and Torres Strait Islander Australians carry twice the epilepsy burden of non-Indigenous Australians, yet routinely encounter the most fragmented care pathways — shaped by geography, cultural barriers, and chronic underfunding.

Primary care physicians sit at the centre of this problem. They are typically the first point of contact when someone presents with an unexplained collapse or a witnessed seizure. Managing epilepsy from general practice requires long, complex consultations — medication titration, coordination with neurologists whose wait times stretch many months, and navigation of financial assistance schemes patients describe as labyrinthine. Current funding structures do not reflect this complexity.

TECHNOLOGY MOVES
Policy lags behind

A team led by Dr Hai Sun at Rutgers Robert Wood Johnson Medical School secured a three-year, $2.8 million NIH grant to engineer next-generation responsive neurostimulation implants. The goal: address a fundamental limitation of existing devices — they reduce seizure frequency in patients with drug-resistant epilepsy, but achieve full seizure elimination in only 15 to 20 percent of recipients. The new program aims to deploy superior AI-driven seizure-prediction algorithms and stimulate broader brain regions where seizures originate.

The interdisciplinary Rutgers team draws on artificial intelligence expertise from Stevens Institute of Technology and physician-scientists from Emory School of Medicine — a collaborative structure reflecting the consensus that epilepsy treatment demands more than neurology alone. Neuropsychology, social work, advanced neuroimaging, AI, and biomedical engineering are all part of the care model that comprehensive epilepsy centres are best positioned to deliver. The team's five-year timeline to market is a realistic near-term prospect.

In Australia, the Senate Committee on Epilepsy has received RACGP recommendations including a 40% Medicare rebate increase for long consultations, greater investment in rural patient transport, and dedicated funding for culturally safe care. The committee reports September 2026. Internationally, a 2023 study in Epilepsia (Yardi et al.) demonstrated that telehealth consultations measurably reduced inequities in access for underserved patients — a program that advocates argue must be funded as core infrastructure, not pandemic-era emergency measures.